Shielding rights of persons with disabilities Author Mugambi Paul

The views expressed here are for the author and do not represent any agency or organization.

 Mugambi Paul is a public policy,  diversity,  inclusion and sustainability expert.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

The COVID-19 pandemic has turned our everyday lives upside down. Recently, its impact on persons with disabilities has been felt in almost all spheres of life.

More barriers on inclusion have been identified by different studies by by individuals with disabilities, organizations of persons with disabilities, governments and also other stakeholders.

For many reasons, people with disabilities are among the groups most at risk in this pandemic. Their often compromised health status means they have a high risk of adverse outcomes if they get the virus; their need for personal care and support with everyday living makes it more difficult to take effective precautions such as social distancing; and, the well-documented inability of health systems to respond adequately to people with disabilities means health services will struggle to provide them with quality care during the pandemic.

People with intellectual disabilities in particular will find it difficult to understand what is happening during this time and are very susceptible to isolation and loneliness. For some, the restrictions on visitors to family or group homes, and limited access or support to use online technology, have meant little or no contact with friends and family for months.

The same story is affecting blind and vision impaired persons. Not even many are aware the proper wearing of masks. Most adverts are too visual thus rendering communication barrier.

 

Needless to say, the role of health services in Kenya is by the county governments.

This has seen had failed to quickly recognize and respond to the greater risks of COVID-19 on people with disabilities, leaving this community disproportionately affected by the pandemic. Early emergency plans focused on older people. In Kenya we are yet to see disability specific pans or even outlined measures by both national and county governments on disability corona response.

Additionally, in other jurisdiction we have seen development of disability advisory committees which is quite important in ensuring article 4 of the UNCRPd is implemented.

We hope soon we can have a disability telephone help line dedicated towards addressing the challenges.

Some silver lining has been seen in some nations on the reopening up of economies by provision of disability inclusive plans and actions.

Will African countries follow same way or we shall ensure protection of rights of persons with disabilities ins not achieved?

 

 

 

Why we must dismantle social ableism Author Mugambi paul.

The views expressed here are for the author and do not represent any agency or organization.

 Mugambi Paul is a public policy,  diversity,  inclusion and sustainability expert.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

As COVID-19 has drastically changed the way we live and relate to one another, Kenyans with disabilities like me have been living in fear, not just of the virus, but of community attitudes to our lives and existence. The pandemic has brought to the forefront deeply ableist ideas held by our society that see disabled lives as disposable. Our lives are not worth living, and are not worthy of the same care and protection. Our deaths do not carry with them the same grief and sorrow that abled deaths do. We are casualties that must be accepted for the greater good of our economy.

This discourse has dangerously manifested in our hospitals, shaping COVID-19 triaging policies and the way medical professionals treat persons with disabilities– with or without the virus.

Globally, its evidently clear some nations they have   disregard for lives of persons with disabilities.

People with disability have been identified as particularly “vulnerable” to this potentially deadly illness. If only we all had the freedom to decide who, and how many people, we have contact with in our own homes.

.

For instance, president of South African President Cyril Ramaphosa has expressed sadness over the death of Nathaniel Julius, a teenager with Down syndrome, during a police operation.

 

I have been continually shocked and angered by triaging guidelines that override shared decision-making processes, fail to acknowledge disproportionate rates of disability amongst already oppressed communities – such as rural and slum dwellers.

I affirm due to the changing times I have had from senior leaders, journalists, business persons who believe we should position life to normalcy.

It’s okay – COVID only really kills old and disabled people. If you’re young, you’re strong and healthy and won’t be at risk. The people who die from COVID don’t really have a quality of life anyway. We really do need to open up the economy for the rest of us. With resources so scarce and hospitals overwhelmed we need to priorities those of us who would actually survive.

 

 

For many persons with disabilities, hospitals are already traumatic places where we are spoken over, invalidated and dehumanized. Frequently they are places that deprive us of care, brutalize our bodies and result in our death. How do we begin to confront the even more explicit violence in our healthcare system COVID has triggered? When I think about the not-so-distant future, and try to imagine how our disability community is coping, I am filled with anguish thinking of the scars these triaging narratives will leave. I think of the trauma being resurfaced for hundreds of thousands of disabled people who have already suffered mistreatment at the hands of healthcare systems, and I think of those persons with disabilities who would’ve survived COVID, had things been different. I vow to remember them and keep working towards a world grounded in disability justice, where no one is disposable and we can receive the care that we need. As Mpofunamba1 articulates in one of the music track attitudinal barriers do exist where women with disabilties are even questioned which animal impregnated you. As f women with disabilities are not supposed to enjoy sex and give birth. Several studies have shown increase of gender-based violence against persons with disabilities.

Based on a biased understanding of appearance, functioning and behavior, many consider disability a misfortune that make life not worth living. To promote the rights and dignity of persons with disabilities, we must dismantle social ableism and embrace disability as a positive aspect of the human experience.

The world’s population is ageing. By 2050, people over the age of 60 are expected to account for 21 per cent of the global population. About half of them will live with a disability, making this the largest community of persons with disabilities—and one of the most stigmatized and neglected.

The deprivation of liberty on the basis of disability is a human rights violation on a massive global scale. As Mpofunamba1 I say it is not a “necessary evil” but a consequence of the failure of States to ensure their obligations towards persons with disabilities.

 

 

 

Parents, You Matter!” Guest author Alison

The views expressed here are for the author and do not represent any agency or organization.

 

I have been thinking hard about how important a parent is in the life of a special needs child…

It’s been a while since I wrote anything about autism. It’s been a crazy season – being home, working from home, and helping the kids with their schoolwork, etc. There is something I have learnt during this season, though. Parents are very important. Parents matter. Parents are special people.

Parents, let me encourage you today.

You know your child better than anyone else

Picture this. You take your child for a therapy session, and they are crying all through. The therapist tells you that things will get better with time, but at the next session, things are the same. You try a few more sessions, and nothing changes. Then you start to notice that your child cries every time you are leaving for the therapist’s clinic, or every time the therapist is just about to get to your house for a session. At this point, you, as the parent, make an executive decision and stop the sessions. Why? Because you know your child best.

I have been there. I have had to make this decision several times. Initially, I felt that I should have tried just one more time, then I realized that it was up to me to make sure that my child was happy and at peace. Nobody else could have done it for me.

You communicate best with your child

Maybe your child is not yet speaking. Maybe you are longing to hear that first word. Can you tell, however, when your child is sad? Can you tell when he or she wants to have a meal or go to the bathroom? Most likely you can, especially when nobody else can tell what your child is trying to communicate.

How does this help? Imagine you go for a therapy session, and the therapist asks your child to do something. Your little one does not respond, and the therapist is stuck. You then offer to try and talk to your child, explaining the instructions. He or she quickly responds by doing what the therapist has asked. Do you see what I mean? Parents always know how to communicate with their kids.

Parents, don’t beat yourself up just because your child is not speaking. There are other ways that kids can communicate like sign language, using technology, writing, using pictures, etc. Find the best way to communicate with your child.

You want to help your child out of love

Nobody wants your child to acquire skills as much as you do. Nobody understands how important it is for your child to be independent like you do. Your love for your child is what drives you to hire therapists, follow the home program, buy equipment, etc.

You may, however, find that the people you hire to help your child are doing it for the money. Others may be doing their job just because it is a job, not because they love working with your child. The bottom line is, your love for your child is what will drive you to keep going, to keep learning, to keep training, and to keep waiting patiently for a skill to be mastered.

I just want to encourage a parent here. The world will not always accept our children for who they are. It is up to us to show them how to love children who are abled differently, and to show them that being different is not a bad thing. Also, surround yourself with like-minded people, people who will support you on your parenting journey, people who will love and accept your child just as they are, and people who may even offer to watch your child while you catch a breather!

You are your child’s greatest resource

Parents, you are your child’s greatest resource. You provide them with love and care. You make sure their environment is conducive to learning. You purchase all that they need for therapy, school, etc. You feed them and clothe them. You teach them the things that only a parent can. You pay for therapy sessions and school. Parents, you rock!

In this season when accessing services is hard, I believe that parents can still do something with their children. What have seen your therapist do that you can do at home? Find out what activities your child can do to improve in areas in which he or she has challenges. For example, if your therapist has mentioned fine motor skills in the past, look for videos with fine motor activities you can do at home. Also, for those who are doing teletherapy, it’s important to remember that a good session works best when you are there to help with setup, resources, etc. You can also opt to get a therapist to come up with a good home program for your child which you will implement.

See how important you are, dear parents?

One last thing, though. You need to recharge from time to time otherwise you will burn out. Find a way to catch a break whenever possible. You need it.

 

How Do Disabled People Feel About Discussing Their Disabilities? Guest author A Pulrang

The views expressed here are for the author and do not represent any agency or organization.

 

 

 

For people with disabilities, talking about our disabilities is complicated.

Sometimes, when people ask their perennial questions, or just look at us in a certain way, we can almost hear them say it:

“Go on! Do that thing you do, where you remind me how my own little problems aren’t so bad. Do that ‘inspiration’ thing that makes me feel better about myself for admiring you.”

What does it mean when a wheelchair user speaks at a political convention? What does it mean when a blind person gives a motivational speech, when an amputee engages students or employees on “disability awareness?” What does it mean when any disabled person, in the ordinary course of their day, is asked to explain their disability, or tell their disability “story?” And what does it mean when the disabled person tells their story? And what does it mean when they say, “No, not today. Not here. Not for you. I’m not here to be your inspiration.”

From a non-disabled point of view, it must sometimes seem like we disabled people can’t make up our minds. That’s because the whole subject is fraught with conflicting choices, each with pluses, minuses, and even moral implications.

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Do we raise awareness, or mind our own business? Do we welcome questions from the curious, or draw clear boundaries to guard our privacy. If we want a better world for disabled people, what is our own obligation to further that goal? Will we share our most profound experiences and thoughts about disability, and for what purpose — or whose?

Some of us are quite anxious to tell our stories to anyone who will listen. It can make us feel less alone with our burdens and traumas. Some of us draw strength and purpose from telling our stories of triumph over adversity, dispelling myths about disability, or advocating for better disability policies and political power for disabled people. Despite popular rhetoric about “not letting disability define us,” a great many of disabled people do organize much of our lives around our disability experiences and identity, and we do it intentionally, joyfully.

PROMOTED

At the same time, disabled people have mixed feelings about sharing our experiences with others. We all have different ideas about the pros and cons of sharing our stories, raising awareness, and “educating” non-disabled people about disability. And what we think about it can change from day to day, from person to person, and situation to situation.

To understand how disabled people struggle with these questions of sharing, educating, advocating, you need to explore some of the positives and negatives we juggle every day.

Positives

First, some disabled people find sharing their disability stories therapeutic. Many who were disabled later in life need to tell how they became disabled. And talking about our disabilities and everyday struggles with ableism can help all of us clarify how we feel about our disabilities.

While few of us like to admit it, many of us do in fact crave sympathy or at least empathy. Getting a positive, supportive response to our disability stories can be validating. It can, at least in the short term, compensate for some of the negativity and unvarnished prejudice we encounter regularly. And genuine empathy can actually make our lives easier by reducing misunderstandings and judgment.

There is also the practical benefit, or necessity, of sharing something about our disabilities in order to get help and accommodations that we need to survive, and that can help level the playing field for our ambitions. Having to reveal private information in order to obtain equal opportunity is a constant burr in our sides. But it is the most consistently beneficial payoff for this awkward exchange.

Finally, some of us choose to embrace being spokespeople of sorts for the disability community, and the cause of disability rights and justice. Some disabled people commit themselves to advocacy, motivational speaking, writing, and educating the public … all of which call for some degree or another of personal sharing. These commitments can give purpose to a disabled person’s life, if purpose is missing or uncertain. It can give meaning to a person’s disability, if meaning is important to them. For some of us, it’s also a living, and a potentially useful one.

The benefits available to disabled people for sharing our stories, experiences, and feelings are fairly familiar. It’s the negatives people tend to forget, but that are constantly on disabled people’s minds, precisely because they are so common and cut so deep so often.

Negatives

For a start, constantly retelling our disability stories can be a seductive trap. We tell it again and again, sometimes on request, or else in search of some resolution that never comes. We stagnate or worse, spiral further into depression and trauma. Also, other people’s curiosity about disability and disabled people’s stories tends to have a very short shelf-life. While they start out craving answers and compelling narratives, most people quickly get sick of them, especially if they fail to fascinate or uplift. Regardless, fixation on our own personal stories also makes it less likely that we will discover the broader disability community and disability issues, and that is a real loss.

Another problem is that many of us quickly come to realize how easily the visibility we craved for so long, and we finally seem to be getting, can be misused, no matter how carefully we craft our messages. As any disabled person who has addressed a political audience can attest, you never know just how much of your specific message gets through, and how much is drowned in a sea of sentimental responses to our very presence. Do audiences come away with a new understanding of health care, or home care, or accessibility? Or do they leave uplifted or amazed at how articulate the disabled speaker was, and how brave?

The most important thing to remember, but so many people miss, is that sharing our stories and educating people about disability always costs us something. The novelty of attention and praise eventually wears off, and you find yourself giving and giving, with little in return. Even if you are being paid … and far too many disabled public figures aren’t paid for what they give … sharing yourself, your passion, and your hopes with strangers takes a toll. And even the best audiences have little ability to give back.

Yet, disabled people are often expected to share our stories and enlighten others on disability matters … as if it’s our unique duty and special mission in life as people with disabilities. A calling is a personal choice. A duty is more of an imposition. A lot of people don’t understand the difference. On the personal level, friendly curiosity about our disabilities can quickly turn to sour resentment when we don’t immediately satisfy it. And demanding to be “educated” is often used as a “put up or shut up” answer to being called out for accessibility failures or other kinds of ableism. If we don’t agree to open ourselves up at all times and give free education, then ongoing ableism is implied to be our fault.

So, when is it okay, and when is it inappropriate to ask disabled people for their stories, or for help on disability issues?

Situations

Obviously, it depends partly on what kind of relationship you have with the disabled person. It’s rarely if ever appropriate to ask a disabled person you don’t know to tell their story, or explain intricacies of the disability experience to you. Asking a coworker or casual acquaintance may be alright, if you do it with care and listen for signs of receptiveness or reticence. You can deepen your relationship with family or close friends with disabilities, by inviting them to share deeper experiences and feelings. But this kind of closeness should never be mistaken for open-ended permission. Having a family or professional connection to disability isn’t a special permit to pry. Neither is having a disability yourself. A disabled person may trust you more if you’re disabled too,, but your disability status doesn’t guarantee access.

It also depends on the time and setting. Certain subjects and avenues of conversation are appropriate in some places and occasions, out of place in others, and totally bizarre or even creepy in still others. Think of how doctors and lawyers feel when people at cocktail parties ask them for medical or legal advice. It’s often like that for disabled people. We feel like everyone’s public encyclopedia of all things disability. No place is taboo, no subject off limits. At any moment, we can be prayed over in the frozen foods aisle, asked in a coffee shop how we have sex, or grilled in the lunchroom on which disability terminology we use.

If you want to engage with disabled people, and learn about disability issues and culture, that’s great! Please do both. But remember that each disabled person is an individual, and we each make our own decisions, using our own criteria, for when and how we want to share, explain, and educate others, from perfect strangers to those closest to us.

In the end, sorting the good from the bad, the appropriate from the burdensome, isn’t that complicated after all. It’s a bit like intimacy and consent. Talking about disability with disabled people can be enormously rewarding for both parties, but only when the disabled person is a willing participant. While some of us consciously choose to be as open and forthcoming as possible, none of us feels that way all of the time.

Above all, no disabled person should ever feel obligated to share, or shamed for not sharing. this is also my school of philosophy . as a Public policy diversity and inclusion expert I celebrate diversity in full.

Dream of Corona from a Disability lense Author Mugambi Paul

With the recent occurrence and high prevalence rate of Covid 2019 in Kenya having recorded over 32 thousand cases in August 22nd.

I wish to retaliate what front line soldiers and policy makers need to put in place to ensure those individuals with disabilities and those who are acquiring a disability in this period are well taken care of and granted the best of serf=vices.

 

The Kenyan health workers should

  • Know about people’s rights
  • Protect people’s rights

People should get the health care they need during coronavirus.

Convention on the Rights of Persons with Disabilities is a law that protects the rights of people with disability around the world.

The Convention is called the CRPD for short.

The CRPD says discrimination is never ok. CRPD says people with disability

  • Have the same rights as other people
  • Must be respected

The CRPD says people with disability have the right to

  • Be included in their community
  • Make their own decisions and

During a pandemic some rights are very important.

  • The right to life
  • Good health and health care
  • Information like Easy Read.
  • People with disabilities deserve to get treatment and medication just like other persons.

People with disability have the right to make choices about their health.

This includes having support to make choices. Supports include

  • Aids like a cane or wheelchair
  • Support workers or family

Communication:

People disability have the right to communicate how they choose.

  • Kenyan sign language
  • Braille
  • Easy Read

Plain language.

Last to be served last one to eat: Author Mugambi paul

The views expressed here are for the author and do not represent any agency or organization.

 Mugambi Paul is a public policy,  diversity,  inclusion and sustainability expert.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

Globally, Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency policy measures being undertaken are not enough.

This is to say the marginalization that existed before covid is still being multiplied and increased due to lack of inclusive disability response starting from the world health organization and the governments.

 

The COVID-19 crisis is taking a grim toll on human lives across the globe. Although the complete impact is yet to be fully comprehended. The coronavirus pandemic has changed almost every aspect of normal life, from grocery shopping to work, from exercising to socialising. While the changes, brought on by fear of infection and the state-mandated quarantine –– which has been in place in Kenya since March 20 –– are difficult and inconvenient for everyone, for those living with disabilities across Kenya, the virus crisis has posed a unique threat to their ability to access basic healthcare, education and to their own individual autonomy. 

 the risk the pandemic

is exposing for gains made towards the Sustainable Development Goals (SDGs) is becoming evident. What this global emergency is also revealing, is that

these 17 goals are, in fact, our best option to recover better and to overcome similar crises in the future.  

Policy statements need to manifest in concrete action.

In other words, inclusion and empowerment of persons with disabilities is essential to ensuring that persons with disabilities are not left behind.

 

 

 As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive.

 

 

of persons with disabilities and prevent human rights violations from taking place. More importantly several studies from the UN body, research institutions, disability sector, individual testimonies and government have shown no disability desegregated data has been recorded up to date. Disability is prevalent throughout Kenyan society, though that prevalence isn’t always represented in policy-making. No less than 15. 10 percent of the population of Kenya lives with a permanent difficulty or limitation, according to organization of persons with disabilities data.

 Additionally, disability is present in 2.2 percent of Kenyan households, according to official data of KBs 2019 census. 

 

 

As a public policy scholar am yet to understand why governments are able to give geographical location, gender age and not disability desegregated data !

Is this not a form of exclusion?

At least 70,000 Americans with disabilities have died in the last 120 days without being on the radar. Those in nursing homes are referred to as ‘elderly,’

with ‘underlying conditions,’ or ‘vulnerable.’ These are euphemisms that avoid using the word “disability”. This diminishes and ignores civil rights protections

for millions.

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Policy makers need to realize that when persons with disabilities are not being counted, they are being locked out of interventions.

The distribution of the cake needs to be served in an inclusive manner.

 

For many countries in Africa they have formed emergency response committees with uyt representation of persons with disabilities.

Should disability persons organization publish experts with disabilties since governments have failed to ensure representation?

Persons with disabilities in low income countries face substantial challenges in terms of achieving self-representation,[1] inclusive employment[2] and integrated education.[3] The Convention on the Rights of Persons with Disabilities (CRPD)[4] outlines a framework for the inclusion and self-advocacy of persons with disabilities, while the Sustainable Development Goals (SDGs) commit to ensure that global development processes are disability inclusive.

 

 

 

Moreover, several general protocols have been made but without any reference on how interventions will be carried out for persons with disabilities.

Additionally, after 4 months of COVID  2019 several countries have started to some sort of disability protocols, of which they contain minor concerns of persons with impairments.

 

Its only south Africa who have made major attempt of having disability inclusive response protocols and interventions.

Obviously, this is a step in the right direction but more needs to be done to ensure no one is left behind.

Likewise, in other countries like in Kenya having sign language interpretor on the TV screen during the Corona state address seem to be an already concluded assumption that they have addressed the communication and inaccessible information gaps.

Does this mean that all persons with disabilities have accessed the information?

the Kenyan social protection policies seem to be driven ‘smoothing

out’ variations in incomes over the lifecycle, I argue  that ‘the dominant effect

of social spending in the Kenya is to redistribute income across people’s own life. For example the recently launched “Kazi kwa mtaa programme”

aids citizens to pay taxes of what they have.

 

The policy brief offers 4 recommendations on how governments can best mitigate the economic fallout of the COVID-19 crisis and protect informal workers:

list of 4 items

  • Continuing emergency income support for workers and businesses operating in the informal economy 
  • Reforming social-assistance schemes to extend beyond the poor—both horizontally and vertically—to ensure that the “missing middle” will have access to

them

  • Ensuring that social-assistance measures are a part of a larger relief package and include loan repayments, rent and utilities payments, and tax breaks

on essential goods

  • Safeguarding women’s access to these benefits

list end

On the other hand, In the book Good Times, Bad Times challenges popular misconceptions about the welfare state

. The book deconstructs the view that ‘welfare’ is exclusively

about out-of-work benefits and that those who are in receipt of such benefits are

somehow ‘other’ to the rest of ‘working Britain’ (a term favored by our current

political leaders). Hills challenges these misconceptions with detailed evidence

demonstrating that in fact we all benefit from the welfare state over the life-course,

getting back what we put into the system. The welfare system in Kenya and most African countries

covers universal entitlements such as education, health care, pension provision, and

youth protection except for the very wealthy), and as such it is something that all of us

make use of at varying points in our lives: when we have children; when we become

unwell; when we need healthcare; and when we grow old.

Hills explains that whilst the welfare system is redistributive (poorer households

do get more out of the system and richer households put more in), the system is

also redistributive for individuals over the span of their own lives – so effectively

he argues that we are all paying for own services and benefits in a kind of ‘savings

bank’ (67). This is the case for all families, with even the poorest 10th of the population

paying in half of what they take out. The rich contribute more because of

the principles that the system was founded on: that benefits and services should go

to people according to their need (as opposed to whether they can pay for it); and

that the taxes we pay should be in proportion to our incomes.

 

In the COVID-19 pandemic, persons with disabilities may face heightened risks, such as increased exposure rates, due to numerous barriers in the humanitarian response. For example, barriers in accessing life-saving information, protective measures and other essential humanitarian services on an equal basis with others. Gaps in the preparedness and response plans increase these risks even further. 

As we hurtle towards the 2030 Sustainable Development Goals deadline, governments are accelerating investments in both social protection and disability and gender equality. This presents

an opportunity to gain a deeper understanding of how social protection can not only reduce poverty, but also contribute to disability mainstreaming. Disability mainstreaming is

vital to achieve sustainable poverty reduction through social protection. In turn, poverty reduction, for instance, through greater income equality and

security provided through well-designed social protection promotes disability inclusion.  

Social protection, particularly in the form of cash benefits, has already proven its ability to 

address multi-dimensional and intergenerational poverty for persons with disabilities of particular are men, boys, women and girls with disabilities

 in different contexts, including increasing women’s savings and investments in productive assets or improving girls’ school enrolment and attendance. Yet, this

potential can also be belied if programmes are poorly designed or executed, resulting in further entrenching prevailing gender inequalities. More needs

to be done to understand how and why programme design and implementation can either strengthen or worsen impacts for women and girls.  

  1. All means all! we cannot have proper digital inclusion if we leave people behind;
  2. We need stronger connections between schools, families and students because connections lead to commitment

list end

 

       

What lessons can African nations learn?

We need to activate disability emergency mode when the glbe is doingit not just to react after the race has already kicked off.

We may have lost many persons with disabilties either through hunger, loneliness, lack of health services, covid itself and other preexisting conditions.

Organizations of persons with disabilities need to ensure duty bearers accountable to them and if need be seeking legal address. For instance. 

Over 1,000 web accessibility lawsuits have been filed in 2018.

Companies like Nike and Amazon are being sued for failing to make their content accessible to deaf, hard of hearing, blind, and low vision users.

       

Conclusion:               

Covid19 has created new societal challenges and exacerbated existing ones however plethis is also an opportunity to rebuild our society in a more equitable

Corona 2019 why did you’ve it imprison the blind? Author Mugambi paul

The views expressed here are for the author and do not represent any agency or organization.

 Mugambi Paul is a public policy,  diversity,  inclusion and sustainability expert.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

 

As a blind person for the past 23 years, I thought I had seen it all! Oh boy, was I ever wrong! After many years of practice at being blind, I have found something that is sending me for a loop.

COVID-19 has done it to me!

My world now is cold, untouchable, lonely at times–which is something hard to handle. I am not so sure I could survive the new world we are all experiencing if I did not believe that my “Heavenly Father” would not be here to catch me when I fall.

Going for a walk, if anyone is passing me by, I’m always wondering if they will possibly get me sick. Going to a market or moll and trying to get assistance, while everyone wants to run away from you. No getting together with friends because no one wants to come and visit, scared we pass the virus to one another. Walking onto a bus and being scared that the person who previously occupied the seat you are now at had the virus.

Or, a simple walk in a park and getting lost because all the roads have no traffic to give me a sense of direction. Yes, to me, this was probably one of the hardest things to handle. My world is open when I have sounds of traffic or sound barriers to help me to be able to be independent daily.

My rural places like playing fields and parks is a place I have known for the past 23 years and I am very used to going there. Now this park and field of play is very different for someone who has no sight. No children in the playground, nobody bringing the dogs to the park, no one bringing me coffee and conversation, and no cars to give me direction as to where the roads are.

The world I knew had familiar sounds to help give me direction, and this I knew was a world that was easier to deal with in my daily life. I also use a white cane and now people are scared. Put jump very first since thy know viruses can spend time on metallic objects. How does a blind person keep social distance from a sighted guide?

 

 

I also have had others say that many in the markets get upset when I use the white cane.

Now I can honestly say that the world as a blind person is hard to cope with! If I did not live in a house with a yard and with a great garden to take care of and give me joy, my world would have been lonely and hard to handle for the foreseeable future.

Meetings online may give me many hours of involvement with my community, but the time spent on electronics is starting to drive me crazy.

I love to attend meetings in person and the opportunity they provide to get to know others and how they are engaged in our community. Now this opportunity is also lost, and I find that the computer does not bring the same spirit into my daily routines.

So, for all of these reasons, “blindness” has imprisoned me again. But this time it feels like I have moved from a minimum-security prison to a maximum-security one.

Disabilities that Complicate Substance Abuse Treatment and How to Overcome Them Guest author Patrick Bailey

The views expressed here are for the author and do not represent any agency or organization.

 

The last thing a person recovering from alcohol addiction needs is yet another obstacle to getting back to the life they know and love. Well-managed inpatient drug and alcohol treatment centers should ensure a physical disability does not impede full recovery.

Disabilities and Substance Abuse

People who suffer from physical disabilities have a higher risk of alcohol and drug abuse. The National Rehabilitation Information Center (NARIC) shows that about half of Americans who suffer from a disability are also likely to suffer from substance abuse (co-occurring disorders or dual diagnosis). That’s compared to 10% of the general public.

Disabled World reports that those with mobility issues—disabilities like amputated limbs, spinal cord injuries, orthopedic disability, arthritis, deafness, vision impairment, or multiple sclerosis—are two to four times more likely to abuse drugs or alcohol.

Yet an anonymous survey reveals that of those suffering from a spinal cord injury or traumatic brain injury (TBI) and also seeking addiction treatment, about half are refused admission to inpatient drug and alcohol treatment centers.

A report from the American Association on Health and Disability (AAHD) shows that physical accessibility negatively impacts the success of treatment for those with disabilities every day.

According to the Centers for Disease Control and Prevention (CDC), one in five American adults has a disability. Most worrisome for those in an inpatient facility are mobility and visual or auditory challenges that prevent them from taking full advantage of the treatment offered them.

Alcohol and drug abuse can complicate treatment for the physically disabled by interfering with therapy, rehabilitation, counseling sessions, and medications.

Overcoming Barriers to Treatment

For this reason, a physically accessible treatment center is essential to those who have both physical limitations and addiction challenges.

Group therapy and support groups can dispel social isolation and offer a healing environment for both those who suffer from addiction and their families. However, an additional layer of support is required for those with an additional disability.

Inpatient drug and alcohol treatment centers can offset this by removing or altering potential barriers to their disabled clients.

The Americans with Disabilities Act (ADA) requires that all private accommodations and commercial facilities that are not residential facilities remove barriers to communication and access that would negatively affect individuals who are disabled.

For this reason and others, a viable treatment facility must accommodate those who are disabled, ensuring they have complete access to the facility.

Making Rehab Accessible

Three factors that can affect a person’s ability to function:

  • A person’s mental, emotional, and/or physical state doesn’t function properly. This can include hearing or memory loss.
  • Activity limitations. Inability to carry out normal tasks.
  • Participation restrictions. A person who cannot participate fully, or not at all, in daily life activities because of their limits. This impacts the way the individual engages in work, social, recreational, or health-related activities that are critical for their health and well-being.

Some of the modifications needed for the disabled include:

  • Ramps and elevators that offer mobility-specific features.
  • Wider doors and hallways for those in wheelchairs or other mobility devices.
  • Power-assisted doors.
  • Even, slip-proof floors.
  • Prominently displayed braille and other sensory navigational features.
  • TTY options on phones for the hearing impaired.

Other Physical Disabilities

Physical disabilities are not confined to one’s ability to walk without aid. They may result from a birth defect, an accident, a disease, or age. Anything that prevents or diminishes a person’s ability to engage in social activities is a disability

Physical disability includes chronic health conditions that prevent a person from participating fully in their day-to-day life. This includes a variety of autoimmune diseases. Some diseases can become a secondary disability that must be considered in one’s drug or alcohol rehab.

Examples include:

  • Asthma
  • Allergies (environmental and food)
  • Crohn’s disease
  • Irritable bowel syndrome (IBS)
  • Ulcerative colitis
  • Diabetes
  • Migraine headaches
  • Cerebral palsy (CP)
  • Cystic fibrosis
  • Epilepsy
  • Fibromyalgia
  • Multiple sclerosis
  • Rheumatoid arthritis
  • Spina bifida
  • Spinal cord injuries
  • Loss of a limb
  • Traumatic brain injury
  • Cancer
  • Lupus
  • Sickle cell anemia

Learning Disabilities

The best inpatient drug and alcohol treatment centers also make accommodations for clients with learning, sensory, and mental disorders.

A learning disability alters the way a person can listen, speak, read, spell, and/or think. Such a disability impedes a person’s ability to process, recall, and/or express information.

Clients with memory problems often have trouble communicating and have a hard time performing school or job-related tasks.

Chronic health conditions such as physical disabilities are risk factors on their own. Add to that a substance abuse problem and removing as many barriers as possible is essential.

Will the “Disabled” Kenyans cry foul after being left in Coronavirus conversations? Author Mugambi Paul

In order not to live the disabled Kenyans who are the largest minority, who make up 15 % of the population.
I opine, disabled Kenyans they deserve not to be left behind.
There is an urgent need for Ministry of health in Kenya to address the rights and needs of disabled person throughout all COVID-19 planning and response.
In other words, for maximum community results in the recent updates from the national and county governments there is the need to close the glaring gap of inclusivity.

Available facts:
Children and adults with disabilities and older adults are 2-4 times more likely to be injured or die in a disaster due to a lack of planning, accessibility, and accommodation. Most people with disabilities are not inherently at a greater risk for contracting COVID-19, despite misconception that all people with disabilities have acute medical problems.
Kenyan government Actions taken now can make a big difference in COVID-19 outcomes
Additionally, the disability sector from both the state and non state actors need to raise the voice not just to remain mum.
Are disabled persons represented at the national emergency committee established by the president?
Are the needs of the disabled catered for in the contingency plans?

Lessons learnt:
One of the greatest lessons in the fight of HIV aids in Kenya is that the disabled persons were not involved nor consulted in the plans strategies for combating the menace.
It took few disability stakeholders to get the national aids control council to ensure inclusivity is realized.
When shall the disabled stakeholders learn not to be left behind?
Should the disability society be involved after the rest of the population? we
Moreover, USAID was very critical in supporting disabled stakeholders in achieving active disability engagements.
Worst still, many disabled persons weren’t aware of how to prevent themselves from the HIV AIDS infection. Many disabled Kenyans died, and many being taken advantage of by the society perceptions and behaviours [HI 2007]
This is because of the late response to the needs of disabled persons.
Several studies showed the greater involved of disabled Kenyans in awareness, contributed to reduction of stigma and discrimination associated with disability and HIV aids.
It also ensured representation in National aids committees, and prevention promoted reduction of spread of the disease. [NACC 2008, Liverpool 2007 HI 2007[.

Role of the disability sector:
Needless to say, disability stakeholders can play a crucial role by facilitating support to the ministry of health on inclusive strategies which will address the needs of the disabled Kenyans.

Legal Obligations and Training
On the other hand, Public and private agencies that provide services to persons with disabilities must be aware of their legal obligations and must train their employees appropriately. When public and private agencies and businesses are unclear about their legal responsibilities, there are no limitations in providing greater than minimum levels of support and services to persons with disabilities. Lack of understanding is NEVER an acceptable reason for failing to meet legal obligations, including throughout emergency circumstances.
Furthermore, the ministry of health has a has a legal obligation to provide equal access to public health emergency services to disabled Kenyans, including throughout a pandemic since our president issued an executive order
Coupled with the support one of the pillars of the big 4 agenda, of Kenyan 2010 constitution on right to access to health services and international conventions.

Needs of disabled Kenyans:

I observe disabled Kenyans require the same resources and assistance that all citizens deserve.
in other words, adequate information and instructions, social and medical services, and protection from infection by those who might contracted the virus. However, some disabled Kenyans may have needs that warrant specific reasonable accommodation by the public and private sectors that may not be necessary for Kenyans without disabilities. This is not much to ask since the current strategies by both national and county governments have not addressed the reasonable accommodations.

For instance, Communications Authority has approved sending of bulk information messages on coronavirus by the Ministry of Health to all subscribers of local mobile phone operators.
I beg to ask:
Are persons with intellectual impairment, Deaf, Blind, psychosocial disabilities able to consume this information?
1. Can the government provide alternative formats of communication in awareness raising? Disabled Kenyans need to be informed of why Ministry of health believe that certain actions are warranted, to be given an opportunity to ask questions and receive answers in an accessible format, and to be afforded the opportunity to object and propose alternative solutions.
2. Another example, the Bagathi hospital has been designated to be the official self-quarantine place.
Has it met accessibility standards?
Are the beds easily accessible and user friendly to Kenyans with mobility impairments?
Moreover, in some places, the distribution of protective equipment, food, and medical supplies might be warranted. If Point of Distribution locations are established, government and private stakeholders must address how these supplies and equipment will be distributed and accessed by disabled Kenyans, elderly and others who have difficulties in movement and lack means of travel. Disabled Kenyans have the right to receive services in the most integrated setting appropriate to their needs.
All in all, the existing legal protections of disabled Kenyans remain in effect under all circumstances. These protections are not subject to waivers or exceptions, even during public health emergencies or declared pandemics.
I Hope there will be no contrition on this journey of ensuring disabled become part of the solutions.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Celebrating our super parents: Guest Author Odumbe Kute

It occurred to me yesterday after something I posted that prejudice and discrimination, whether conscious or sub-conscious is a very big deal in our lives.
I’ve been a disability and human rights activist for over 24 years and the one thing that rings true through all the work I’ve done around the world is
this. No amount of legislation, education and advocacy will ever cover for ignorance and prejudice about disability that is experienced every single day
by those affected.

It’s not just the general public. The worst offenders are family, close relatives and people who masquerade as friends. The thing is this. Most people
act the way they do, discriminate like they do, judge like they do, say really stupid and very hurtful things like they do, gossip like they do, show their
prejudice like they do because they’re afraid. You’d like to think that they’re just ignorant, but the truth is that they’re afraid. Afraid of what is
different, afraid of their own insecurities, afraid of how they would cope if they were ever in a situation where they would acquire a disability, give
birth to a child with a disability, have a spouse who acquires a disability or have to care for someone with a disability.

They go around calling themselves “normal”, whatever the hell that is. Here’s a wake up call. At least 1 of every 5 people in the world has a disability
of some sort, most of them hidden and not visible to people. It could be mental health, it could be chronic back pain, it could be sickle cell, it could
be a neurological condition ranging from autism to ADHD, it could be any number of debilitating conditions that people are shit scared to talk about for
fear that they might get labelled or judged. They refuse to look at it as a disability. They only choose to consider disability as a physical and medical
thing.

I haven’t even begun to talk about the hundreds of thousands of parents who have a differently abled child. Our society is brutal. Take the mothers of
kids with a disability from autism to CP, from physical to sensory disabilities. Those who stay in relationships and marriages after giving birth to a
differently abled child are considered the lucky ones. But are they really? Most mothers of children with a disability are single because they’ve been
abandoned at the traffic lights. They’ve been ostracized and become outcasts in their own families, in their marital families, amongst their friends and
relatives. They are seen as vessels of witchcraft, accused of bringing forth defective offspring that sully the gene pool of the family. They not only
have to deal with the challenges their child or children face, they are also as individuals, totally discriminated against and judged for every move they
make.

Let me tell you something about these women. They are amazing. They are Ninjas. They are super women, most of whom have to give up their entire lives,
their hopes and dreams and they sacrifice everything to give their differently abled children the best chance they have in life. They live isolated lives
because of the open and mostly hidden discrimination they face by people closest to them. But the one thing that will never be taken away from them is
their resolve, unconditional love, determination and sheer stubbornness in not giving up their default role as primary care givers to their children.

Most if not all these women go through hell every single day to make sure that their children have the best they can have in life, despite their individual
means. Some can hustle and get a shilling here and there, some don’t have that opportunity. Even for families who would ordinarily be financially stable,
the cost of therapy, medication, education, nutrition – you name it, is capable of bringing them to their knees. Some of these women cry themselves to
sleep every single night praying to their God and asking why he or she has forsaken them. And yet, the next morning, they wake up and do it all over again.

I submit to you that you “normal” people as you call yourselves; you people who have perfect lives that allow you to pass judgement over those who have
a different life; you people who stare and shake your head in disgust at a mother whose autistic child is having a melt-down in a supermarket and saying
that “what is wrong with that mother, her child is spoilt”; you people who have the luxury of not knowing the pain of a mother with a non-verbal autistic
child who is in unbearable pain and distress and unable to express themselves; you people who judge and come out with ignorant and stupid comments like
“that one was bewitched”, “that one’s dowry wasn’t paid and that’s why they have a disabled child”, “that one must have done something in a previous life”
– I submit to you that whichever God you pray to is kind enough to have spared you and gave you the right to be ignorant and stupid. Because if you were
ever in the situation that others are in, society has to be lucky that your not one of the ones who will be able to cope with the burden and responsibility
of caring for and loving someone who is different. Pray to that God of yours to never put you in a situation that you become disabled, a spouse or child
of yours becomes disabled, or you give birth to a child with a disability.

Why have I written this post you may ask. It’s because of the sheer amount of in-box messages I’ve got from parents of children with a disability, mostly
those on the autism spectrum, who were absolutely furious that I had to explain that my son is autistic to parents that commented on my post and took the
“your child is bloody spoilt” view. There is a parallel here to real life where the constant need to explain to those who are discriminatory and prejudicial
has become tedious for them and enough is enough.

Let me conclude with a simple example. A couple of weeks ago, a distressed mother on one of the support groups posted a question asking what they can give
their autistic child to calm them down when she has guests. Let me first say, many kids on the autism spectrum will be on medication, and this should only
be for their benefit and if it improves their development. But the thought of having to medicate your autistic child to make it easier for guests? I was
like – Fuck that. The only intervention needed is to bitch slap those guests out of your house. If your own guests cannot come to terms with the fact that
your child is autistic, they have absolutely no right to be guests in your home, let alone friends.

The Outrage of the missing data of women with disabilities in Kenya “where are you my sisters?” Author Mugambi Paul.

The upcoming international women day’s gives scholars, practitioners and other public policy stakeholders to ask ourselves the pertinent question.
Has Kenya done well in advancing the rights of women and girls with disabilities?
Has Kenya broken the barriers of inclusion of women with disabilities?
Has the disability space been accommodative of women with disabilities?

As a public scholar I join in the reflection of the Kenyan disability public space.
Absolutely not, this is one of the debates which the stakeholders in the disability sector need to engage.
Are women with disabilities actively engaged?
I live that to other analysts. As a matter of principle, I say representation matters.
On the other hand, I thank the president of Kenya having appointed Madam MUkhobe at the highest decision-making organ in the country since 2013.
Where is the Data and statistics of the disabled?
Numbers don’t lie.
Globally disabled persons are at 15 %.
3.8 of the are persons with moderate to severe impairment.
5.1 % of the children with disabilities are below the age of 14.
0.7 % have severe functional impairment.
19 % are women with disabilities world report 2011.
To put matters into perspective, In the latest 2020 national council of population report has no data of women or girls with disabilities.
Does this mean that women and girls with disabilities do not get pregnant?
Are women and girls with disabilities not sexually active?
Different media channels on a weekly basis in Kenya have been reporting of how women and girls with disabilities have been experiencing gender-based violence in the hands of family members or even under the institutions mint to support them.
I believe This is another big blow to disabled persons in Kenya after the release of Kenya bureau of statistics 2019 census report. Which in essence reduced the data of disabled Kenyans.

Will disability sector continue with the same old ways of addressing this challenge?
Will the disability sector move out of board rooms and actualize the dreams of girls and women with disabilities?
Does the national council of population have a disability mainstreaming committee?
The lack of disability desegregated data will obviously affect planning and service delivery for girls, boys, men and women with disabilities.
In other words, the national council of population affirms that women and girls with disabilities have never experienced gender-based violence nor gotten pregnant.
Let me remind the disability stakeholders women with disabilities are more likely to experience sexual violence than women without disabilities.
This is also coupled with disabled Kenyans who face barriers to accessing services in both public and private sectors.
Most disability policy stakeholders know the barriers that disabled Kenyans face but have refused to actualize them.
Disabled Kenyans persons have been left chanting in the social media as a tool of advocacy.
Am not surprised to note in March 4th, 2020 a person with physical impairment was begging for a wheelchair on in one of the social media platforms.
Which system works for disabled Kenyans?
Will the Big four agenda be realized for disabled persons?
When will Kenya declare begging an economic enterprise for disabled persons since the constitution provisions aren’t working for disabled Kenyans?
several studies show Women and girls living with disabilities often face additional marginalization in their experiences of abuse as well as specific barriers to accessing services, due to:
• economic and/or physical dependence on the abuser, which challenges efforts to escape (particularly within family and sometimes institutional set ups. Several research in Kenya have indicated women with disabilities have suffered from forms of abuse specific to women living with disabilities (e.g. withholding of right medications, like the case of national children council exposed by NTV Kenya in 2019.
research done by women with disabilities organizations in Kenya show denial of assistive devices is also rampant.
Additionally, there is also refusal to provide personal care), which are less documented and may not be explicit within legal definitions of abuse.
For instance, Menstrual Health in Kenya: Landscape Analysis published in May 2016 never showed the extent to which women and girls with disabilities can’t access sanitary pads.
As Well lack of or limitations in physical accessibility of venues for women with disabilities still remains one of the barriers.
Furthermore, perceptions by service providers like health continue to plague the system in place.
This is because many believe that they cannot provide services for women with disabilities given their resource or capacity limitations. Mainstream women organizations and women service providers have not entrenched any inclusive measures of engaging or consulting women with disabilities.
In other words, lack of programming informed by and implemented in consultation with Kenyan women with disabilities or misinterpretation of their needs in escaping and overcoming the abuse they have experienced. Thus, having gaps in collaboration between disability organizations and service providers supporting survivors, as well as assumptions by each group that survivors are served by the other. A study by Kenya national human rights commission in 2015 indicated low sensitivity among law enforcement personnel or other service providers, who may not inquire about abuse by caretakers, or disregard reports from women with visual, speech/communication or motor coordination disabilities (e.g. cerebral palsy), assuming they are intoxicated or are not serious in their claims. The KAIH who have been working closely in the legal apparatus affirm that biases among judicial personnel and courts is evidently seen.
For instance, cases of provision of preferential treatment to the abuser in child custody due to the victim’s disability (

What can disability sector and stakeholders do to change the narrative?
Develop Strategies and tools to prevent violence against women with disability. E.g. have inclusive training tools on gender violence.
Ensure collection of data collected is gender, age and disability desegregated in reporting and monitoring
Share best practices of gender and disability equitable practice
develop inclusive Referral system and services which can assist in responding to women with disability who experience violence
have more role models among women with disabilities.
Collaborative initiatives with the mainstream women organizations
list end support men with and without disabilities who are supporting reduction of gender-based violence initiatives.
Conduct inclusive training to service providers in both health and law enforcing agencies.
Ensure engagement and meanful consultation with women and girls with disabilities from rural and urban set up.
This will actualize the slogan not living any one behind as the sustainable development goals advocate.
global commitments 2018.

In conclusion:
The truth of the matter is Kenya is known to have progressive disability
related laws and policies but poor implementation is the order of the day.
As a result the dire state of affairs of women with disabilities is not due to lack of new ideas. The biggest problem is lack of capacity to take up and implement the new ideas in existing policy documents.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Disabled Kenyans outcry of the elusive accessible housing plans: Author Mugambi Paul

According to the Convention on the Rights of Persons with Disabilities it recognizes the right of persons with disabilities to adequate housing and their right to social protection (article 28). The Convention was adopted in 2006 and ratified by 180 countries, where Kenya is one of the earliest countries to do so.
more importantly in 2017 Kenya adapted the big 4 agenda where affordable housing is one of the key issue.

Where are we:
Arguably, there have been back and forth debates on how the public will be entitled to the affordable housing schemes in Kenya.
There has no been any agreeable way between the 3 arms of government and the public at large.
The lack of public participation in the affordable housing seam to have reached rock bottom.
This is coupled with lack of clear policy frameworks which could ultimately have guided the process.
In Jamuhuri 2019 the president of Kenya seem to have soften the stand on involuntary housing contribution. This has led to treasury in 2020 February budget policy estimates to the Parliament to say that it will allocated 0 budget for housing plan.
Although the private sector is investing on the housing agenda.

What’s happening at the National level?

In 2015, the UN Member States adopted the Sustainable Development Goals which call for access for all to affordable housing and implementation of appropriate social protections systems for all, including persons with disabilities (Goals 11 and 1).
But Kenyans with disabilities remain largely invisible in the implementation, monitoring and evaluation of these commitments. Notably, Lack of reliable and timely data, evidence and research on persons with disabilities continue to pose challenges to the inclusion of persons with disabilities and the full implementation of Sustainable Development Goals, including Goals 1 and 11.
This is affirmed by the latest Kenya bureau of statistics 2020 where disabled numbers dwindled.
Lessons for policy makers in the disability sector:
Mobilization of expertise on disability inclusion in housing agenda needs to be considered.
Disabled persons organizations need to participate in public participation forums to ensure their issues are hard by the ministry of housing and transport.
The disability sector policy makers need to resource and facilitate disabled Kenyans to this process of ensuring inclusive measures are observed.
The disability sector should demand 15 % of the housing units being constructed to be accessible and owned by disabled Kenyans.
The UN report 2018 shows that despite the progress made in recent years, persons with disabilities continue to face numerous barriers to access affordable and adequate housing and a disproportionate number of persons with disabilities are homeless. They face many barriers that prevent them from enjoying their right to adequate housing, including higher levels poverty, lack of access to employment, discrimination and lack of support for independent living.
On the other hand, On 19th February 2020 the gavel fell on the
58th session of the UN Commission for Social Development,
which agreed the text of the historical first United Nations resolution on homelessness. A serious violation of human dignity, homelessness has become
a global problem. It is affecting people of all ages from all walks of life, in both developed and developing countries.
Relevance of data:
Globally, 1.6 billion people worldwide live in inadequate housing conditions, with about 15 million forcefully evicted every year, according to UN-Habitat,
which has noted an alarming rise in homelessness in the last 10 years. Young people are the age group with the highest risk of becoming homeless.

The UN Commission’s resolution recognizes that people are often pushed into homelessness by a range of diverse social and economic drivers.

“It could happen to anyone. It’s not always drugs, alcohol. It’s not always something external. Life happens. And life can happen to a whole lot of us.
It did during the great financial crisis, and it could very well happen again”, said Chris Gardner, who had described his experience of homelessness in
his bestselling book, “The Pursuit of Happiness”.

“We, as a great human society, we are diminished, we lose the gift of their creativity, the gift of their curiosity, the gift of their potential when it
is marooned by all downstream consequences of homelessness”, said Mary McAleese, Former President of Ireland.

“I will never forget my first experience with homelessness. I, unfortunately, was born into a family plagued by a chain of events which included domestic
violence”, added Chris Gardner. “My one regret about being here today is that the two most important people in the world to me couldn’t be here today‐‐‐I’m
referring to my granddaughter and my goddaughter. One of them says that she wants to become the President of the United States and the other one says
that she wants to become an astronaut and go to the moon. And you know what I say to both of them every day? Let’s go!!! THAT’S THE POWER of ONE!”

In its resolution of the UN Commission for Social Development calls for a response by all sectors within Governments and societies. The Commission recommended
the resolution for adoption by the UN Economic and Social Council later this year.

The Commission also celebrated the
25th anniversary of the World Summit for Social Development
and its Copenhagen Declaration. Stakeholders and experts from all over the world expressed strong support for the work of the Commission, noting that
the outcome of the Copenhagen Summit remains relevant today and continues to guide social development in their countries.
Kenya ministry of social protection was recognized on this event.
All in all with the current trends in Kenya it remains a pipe dream for having accessible housing in place.
This is because there are no adequate measure or regulation in place to ensure real inclusion is achieved in housing agenda.
What remains is the low confused undertones among the Kenyan disability community without knowing which direction to take!

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

The Deep Crises in the Kenyan disability sector Author Mugambi Paul.

Kenya is a country faced ultimately by many challenges as a developing nation.
Issues of disabled persons seem to be hanging in the Kenyan movie of activities.
No one or any institution seems to understand how to handle the first pace changes taking place in the global disability sector.
The disability sector seems to be blaming each other for the failures and the inadequacies felt by the wanjikus with disabilities.
Issues ranging from lack of representation in the building bridge initiative, lack of adequate data from the Kenyan bureau of statistics to delayed
Service delivery.
Let me not dwell on the Corana virus.
As a public policy scholar let be engrain me to the importance of collecting desegregated
data for disabled. Persons.
According to standard media, the release of additional census data by the Kenya National Bureau of Statistics (KNBS) should be a wake-up call to policy makers in both the county and national governments. The numbers present valuable information on trends and patterns within the country’s demographic that should inform policy decisions and resource distribution
This was after the realise of the numbers byt the Kenya bureau of statistics. Unfortunately, for disabled person it was a bitter peal to take having lots of expectations.
The data presented seem to have reduced the numbers of persons with disabilities.
What happened?
The reality check indicates the lack of proper representation and lack of technical knowhow of disability data desegregation took place.
did the disability sector participate in the cycle of activities at the Kenya bureau of statistics?
The data released seems to be negative.
Reasons?
First application and training of the use of the Washington group of questioners was not properly conducted.
Secondly no pilot activity was done on how to collect disability desegregated data.
Thirdly the training of enumerators was a second thought.
Fourthly, were the organization of disabled persons involved in the process?

Facts for consideration:
It is well known. That
An estimated one billion people worldwide live with disabilities. Of the world’s poorest people, one in five live with disabilities.
Notable, in developing nations like Kenya conditions where we lack material resources as well as opportunities to exercise power, reach our full potential, and flourish in various aspects of life. (WHO and World Bank, 2011).
Globally, People with disabilities were not listed as a priority in the Millennium Development Goals. This is also true in the Kenyan context where disabled persons are not listed in the big 4 agenda. As a result, there is exclusion from many development initiatives, representing a lost opportunity to address the economic, educational, social, and health concerns of millions of the Kenyan’s most marginalized citizens (UN, 2011). In contrast, for the 2030 Agenda for Sustainable Development, United Nations member states pledged to leave no one behind, recognizing that development programming must be inclusive of people with disabilities.
Expected irreducible minimum:
To ensure disability-inclusive development, disability data must capture the degree to which society is inclusive in all aspects of life: work, school, family, transportation, and civic participation, inter alia. Disaggregating disability indicators will allow us to understand the quality of life of people with disabilities, towards developing programs and policies to address existing disparities.
Opportunity for Kenya disability movement:
Kenyan disability movement should stop board room meetings among themselves and join where the cake is being mashed and prepared.
At the Global Disability Summit in July 2018, the World Bank announced new commitments on disability desegregated data support to countries.
Specifically, the Bank pledged resources to strengthen disability data by scaling up disability data collection and use, guided by global standards and best practices.
This commitment is aligned with the World Bank’s October 2015 pledge to support the 78 poorest countries in conducting household surveys every three years. Regular household surveys are an excellent option for disability measurement, as they can be stratified to oversample people who are more likely to experience limited participation in society. In multi-topic household surveys, disability data can be collected along with other socioeconomic data, enabling a richer analysis of the experiences of people with disabilities. Finally, regular household survey programs can measure the change over time and space in key indicators such as the frequency of types of disability, severity of disability, quality of life, opportunities and participation of people with disabilities, and rehabilitation needs. For example, the recently launched 50×30 initiative may offer a good opportunity to collect disaggregated farm- and rural-related indicators by disability status
The Kenyan disability sector should stop ghetorization of disability issues and we shall realize real mainstreaming when we speak to where barriers exist.
It is encouraging that more disabled persons in the social media are demanding a specific census for persons with disabilities.
Weather this will be executed time will tell.
All in all, we need a model survey for disabled persons in order to have proper planning and ensure we get the Kenyan national cake.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Will you Be my Valentine? “Tips for an extra special day with your blind partner” Author Mugambi Paul

Friendship, love, and romance are in the air with Valentine’s Day in Nairobi..

Whether you’re on your first date, or it’s your tenth with your true love, planning the right date night, getting the right flowers, a gift, dinner reservations,
etc can be a bit stressful.

And you may imagine that going on a first date with someone who is blind or visually impaired can even be more awkward.

But in reality, going on a date with someone who is blind or low vision is no different than dating any other person.

Here are a few tips for sighted companions or partners to help make your date memorable.

#1 Sighted Guide

Consent is key! Once you’ve selected a place, made a reservation or planned an activity, don’t forget to brush up on your sighted guide technique.

There is an etiquette to offering sighted guide assistance to a blind person. Always ask first, don’t grab or push.

Now a days I combine my White cane experience with Sunu Band
to navigate indoor spaces like restaurants and cafes. Moreover, it has aided me with the line like at theaters, so I know when it’s my turn to move up in the queue.

The Sunu Band is also great for when you are doing a sighted guide as the blind or low vision person being guided retains awareness and more control.

#2 Be descriptive

But not overly so – allow your partner the chance to soak in the ambiance.

Now that you’ve arrived at that fancy, romantic restaurant or place, offer a lite description of where you are to your partner.

Allow your blind partner the chance to ask about his/or her surroundings.

#3 Don’t just read the menu

make it conversation instead of reading a list.
You know Nairobi hotels and restaurant do not offer braille, or large print menus, you have to check with your partner their preference.

If those aren’t available, you can start by asking what are they’re in the mood for drink and food? If it’s a place you know well, make a recommendation
or mention the specialty of the house.

But whatever you do, don’t order or speak for your blind or low vision partner. Especially, don’t allow waiters or staff to ask you to speak for your blind
partner.

In the event it happens, tell your waiter to direct the question or comment to your partner.

#4 Table manners are still king

And throw away the messy stereotypes. Enjoying a meal with someone who is blind or low vision is just like eating or drinking with anyone else. Again being
a little bit more descriptive is good.

When the meal arrives, you may offer a quick description of where things are on the table. For example, your wine glass is to your left or at your 9 O’clock.
Sometimes using the clock reference is helpful.

Remember, don’t overdo it and stress about the vision impairment. Just be yourself and enjoy each other’s company through great conversation, drinks, and
food. At the end of the date, the most important thing is that you both have fun.

Additionally, everyday should be a valentine.
You should even practise self-love.
Self-love means allowing yourself to be happy. Too often, we manipulate ourselves instead of increasing the amount of joy we bring to our lives.

So, every day, do things that make you feel good. Even 10 minutes of self-care can add up and make you feel much better in the long run. But you’re worth
more than 10 minutes. You are the most crucial person in your life. Act, accordingly, show love, and be open to receive love.
All in all, do things that fulfill your soul. Get rid of people who don’t make you feel good.
What others say or think about you has nothing to do with reality. It’s just their perception.

Sure, we’d all like to be around people who are kind and loving, but the harsh reality is that rudeness exists. Yet, it doesn’t need to affect you and
especially not your wellbeing.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

The cost of remaining mum on Kenyans living with disabilities and individuals with chronic illness Author Mugambi Paul

Research shows that most chronic illnesses can affect every single part of individuals life, but it doesn’t really look like it. Some chronic illnesses have constant pains and fatigue among individuals [WHO 2011].
On the other hand, I have engaged several individual in the social media platforms.
This has led me to learn several lessons
You might not know a person is suffering if you don’t communicate ]HI 2011].
I classify some of these individuals as having invisible disabilities.
This is to say invisible disabilities mean that often times,
people don’t believe that actually individuals can be sick. This leads to people saying common things that, despite usually having good intentions, can come off as rude,
dismissive, and ableist.

The one I’ve heard the most is something that has undoubtedly been said to every person with an invisible disability or illness – the dreaded ‘but you
don’t look disabled nor sick!’. This happens all too often as an offhand comment, but it’s also been followed by heartbreaking situations like eventually losing friends
who haven’t believed that chronic illness or having impairment was real because people don’t look or act sick in the way they think one should be?
So, to give you a bit of a crash course, here’s some examples of what NOT to say to people with chronic illness.

‘But you don’t look sick!’

Yep, I know – but I am. These five words reduce health down to appearance, which is not the case at all. You might be saying this with the best intentions
(hopefully shock, because someone look ~too stunning~ for someone who’s actually very ill) but what it actually does is hits on one of the biggest fears of chronically
ill people – that people don’t believe them.
Actually,
Personally, whenever someone says this, it just reminds me of the many times people haven’t believed I can’t see because I didn’t *look* Blind. You might mean it supportively,
but all I hear is doubt.
This is because am super in mobility and orientation especially in familiar territories.
Sometimes it’s an anxious moment for me when individuals with out disabilities just plainly discuss behind my back “look at him, he is just pretending, he is comfortable” not knowing I have to go an extra mile to orient myself, secondly he or she doesn’t know that I have to do it since I don’t have alternative.
Additionally, I note that Not all illnesses are visible.
I can guarantee you; every chronically ill person has tried absolutely everything they physically and financially can. I cannot think of one person who’s
simply said, ‘ah bugger, I’m chronically ill. I’m not going to bother trying things to feel better!’
Trust me, some have tried it all; all the doctors’ and specialists’ suggestions, and yes, a bunch of the tinfoil hat ones too (desperation and lack of medical
answers make for strange bedfellows).

Examples of suggestions of what my friends the blind community and other persons with disabilities have tried including: various supplements, Chinese herbs, marijuana, LSD, ketamine, essential
oils, drinking their own urine, crystals, B12 shots, spirulina, charcoal, detoxes and juice fasts, prayer and religion – the list goes on,
as a blind fellow you can guest which one of them, I have tried I’ll let you ponder on which).

And before you ask, yes
You have seen many disabled persons, the chronic ill persons going to work, or you saw a photo of one catching up with a friend on the weekend. That’s irrelevant to whether he or she look ‘okay’ to you now
He or she still remains ill, and he or she maintains his or her impairment since they do not disappear.
According to several studies they indicate the nature of chronic illness is, sadly, extremely can be unpredictable. One can have totally manageable levels of pain and fatigue one day, and barely able to
walk the next. Sometimes it’s because one accidentally overexerted himself and went over my limits, but sometimes symptoms flaring can be completely random.
If you find it annoying, just try to imagine how frustrating it is for individuals with chronic illnesses. Regardless, some have always sick and in pain – some days some are just able to manage
it (and hide it!) better than others.

‘You just need to snap out of it and push through.’

‘Pushing through’ actually makes someone, and many others with chronic pain and illness, worse.
In Kenya and other developing countries there is no particular policy framework addressing concerns of persons with chronic illnesses although a mention here and there on different framework.
Most families carry the burden of taking care of chronic ill individuals and this affects the economic and social wellbeing of the society at large. The resources used to trat could have been used for other functions [ILO 2017, undp 2016].
Its high time we have particular social protection measure to address persons who have chronic illnesses.
Moreover, one of the major experientials in the disability world and chronic illness which seems to be similar is the way the society expects us to push ourselves beyond our limits
Obviously its so great to push beyond limit but this doesn’t apply to all persons. What the society doesn’t understand persons with disabilities and individuals with chronic illnesses are not a homogenous group.
one is sick or disabled every single day, and know their body and their limits better than anyone – so telling one to ‘push through’ is actually
the worst possible advice. When you’re talking to someone with disability or a chronic illness, remember just because you’d be able to manage something, doesn’t mean
they can or should. Don’t assume someone’s health and limits for them. It totally removes their agency as a human being.
Besides having a disability some individuals might also be having chronic illnesses.
‘You’re too young to be sick!’ or sometimes for disabled persons they say woyee woyee how comes he is blind?

Yep! He or she is young! And sick or having a disability! It sucks. But sickness and chronic illness isn’t exclusively the domain of the elderly; people of all ages can get sick. The society needs to understand that Doesn’t
make their experiences less valid, or their identities abnormal. They just sick in a cool young person way, I guess. I don’t know – it’s a weird thing to
say, so just don’t.

‘If you stopped talking about it all the time and looked on the bright side, you’d feel better.’

I do! To be totally frank, as a blind fellow if I didn’t look on the optimistic side, I wouldn’t be alive right now. Being blind for 23 years now it’s not a walk in the park.
It takes strong will to be in this unjust society.
This also applies to other fellow disabled persons.
Needless to say,
Being chronically ill is also tough as hell, and many chronic
illnesses have strong ties to mental illness. One has to look on the bright side A LOT, otherwise their depression and just the daily battle of being sick
would drag one down and some can’t be able to get out of their beds.

All in all, people should be able to talk about their lived experience as much as they deem appropriate, and disability and chronic illness is not spoken about
enough. Let them vent, let us explain, let them talk about their day!

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Why disabled academicians in Kenya have botched the fellow disabled! Author Mugambi Paul

Approximately 15% of the world’s population lives with some form of disability, according to a 2011 World Health Organization report.
Its expected by July 2020 the Kenya bureau of statistics will author new numbers.
Going by the world report and UN estimate we are 6 million with disabilities.
Historically, Disabled persons worldwide have become conscious
Of their rights] un 2018].
for instance, for disabled Kenyans in particular, decolonization held additional possibilities and potential. National independence promised
not just majority rule but also an all-inclusive citizenship and the commitment to social justice. Among the blind and visually impaired of Kenya, such collective
aspirations led to the birth of the Kenya Union of the Blind in 1959. In 1964, after years of futile correspondence with government officials, the Union
organized a street march to the prime minister’s office to attract attention to its grievances. The result was a government panel, the Mwendwa Committee
for the Care and Rehabilitation of the Disabled, whose published report became the blueprint for social and rehabilitation programs.
More importantly, in the early 90’s evolution of disability persons organizations led to high demand for government to put in place legislative measures.
Therefore, Kenya was not left behind and thus a formation of a taskforce in 1993by the longest serving attorney general in Kenya Mr Amos Wako.
It seems to be a torturous journey to achieve mere policy or regulations concerning disabled Kenyans.

Moreover, it took 10 years to have the persons with disabilities act of 2003.
This seemed to be an act of charity just because the then president Kibaki had joined the club [Eddy Robert 1874]

Unfortunately, even to date the national disability policy still remains in draft format!
Where did we go wrong?
Academicians with disabilities are strangely not in the scene.
To put it differently not much academic research has been conducted.
the Kenyan disability discourse need to be changed by scholars.
I observe that researchers need to establish what has worked in promoting disability right in Kenya.
What circumstances ensured change of policies or regulations?
What are lessons learnt?
The current dispensation of the disability agenda is either led by disability elitist, technocrats who are either nor committed to the realization of the disability inclusive agenda.
Other stakeholders are disabled persons who have wealth of lived experiences and who most have pursued different careers other than contributing to this discourse.
Should disabled academicians continue being at the periphery?
What’s need to be done:
As scholars with disabilities and who have lived experience of disability we need to where the academic lenses and fertilize the disability agenda in Kenya.
There exists lots of gaps which I believe can be addressed by research and can shape the public policies intended to serve persons with disabilities.
Am not surprised that Kenya has not yet understood which model of service to pursue. Either the current model of charity which has contributed to the disempowerment of disabled persons in Kenya or the social model which empowers and enables the disabled persons to make their choices and live in dignity.
Additionally, the definition of and understanding the path to pursue on it her disability inclusion or special needs is an area yet to be resolved.
As a disabled person who is a Blind and also a scholar, I wouldn’t like the notion of imagining that a certain entity or institution owns any disabled person.
The truth of the matter we us disabled person were born free it’s the society which has chained us. I am a believer in disability inclusion therefore I do not expect disabled to be directed or lamped into a single source of service delivery.
Best practise:
I assert with the new executive order by the interior ministry on issuance of passport, national identity card and birth certificate of ensuring Kenyans get within one day model,
This offers a rare of hope and should spread to all government entities for effective service delivery.
More importantly, disabled Kenyans have been marginalized in many fronts more especially in getting relevant documentation.
Are we expecting change?
The Kenyan society needs to affirm that all services need to be inclusive as much as possible.
In other words, the different stakeholders need to acclimatize with the reality that Kenyans want effective, easy and accessible service delivery.
This will aid towards meeting realization of vision 2030, sustainable development goals and the global commitments 2018.
Through search processes we can have lots of contribution in having a new dispensation of disability in Kenya.
Nevertheless, with achievement of great strides, the best practises which might arose from implementation of the new directive by the ministry of interior can facilitate the improved versions of regulations targeting disabled persons.
On the other hand, As I had said in my previous articles the reappealing the 2003 act will take place in 2021 and it seems my words will pass.
All in all, academicians with disabilities need to rise up and contribute to the direction and shape the opinions of transforming Kenya.
This can be done in different models and mediums.
The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

A letter to Louis Braille from Blind compatriot and Author Mugambi Paul.

Lon post alert.
Happy birthday Louis Braille. You are 210 years.
I celebrate your courage and hope that you bestowed upon the Blind, vision impaired, Deaf Blind and other interested sighted counterparts.
You invented a language which has ensured that we aren’t beggars on the Kenyan streets.
You ensured am not a Cobra a story for another day when underestimation was the order of the day.
#Soyinka Lempaa
Imagine am your cobra would you bring your shoes?
# Tshrooh Benz Mamake Ozil would you cofee me?
Or you shall be the best and enjoy my company like #njeri Kinuthia Hinga?

I pay tribute to you for ensuring we the “Blind” do not become illiterate.
It took 200 years for the United nations to have this commemoration. World Braille Day is observed to raise awareness of the importance of Braille as a means of communication as a full realization of the human rights of the blind and vision impaired persons.
More importantly, Sighted crusaders in this era of digitalization would like to see “Braille” become extinct but as for me and by “Tribe mates” we won’t allow.
We shall continue to demand for alternative mode of communication as enshrined in the article 7 of the Kenyan constitution and article 9 of the UNCRPD.
Even if we receive 2030 vision braille copy in May 2019 while the rest of the country read for themselves in 2008.
We shall not relent.
Article 21 of the UN Convention on the Rights of persons with disabilities obligates member states to ensure that information intended for the general public is in
accessible formats such as braille, and as per article 24 of the CRPD countries are to ensure that in the education system, students who are blind receive
their education in the modes that are most appropriate to their needs, such as braille from educators who are fluent in braille.
Why should the sighted dictate what the Blind and vision impaired language should be?
Imagine if the whole country would be Blind.
All of us would use braille! Big 4 agenda will reach the blind 2025.
Just like you back in our compass days we had to memorize what was being taught or read by Mighty volunteers at Kenyatta university.
Am grateful for those heroes and heroines who were our volunteers.
In other words, am yet to understand how we the “Blind” survived the hardship of the Kenyan education system.”.
Am not being proud here
Many blind and vision impaired persons passed with flying colors and defeated the sighted counterparts who had all access to information.
Imagine if we had equal opportunities what can the Blind and vision impaired persons do?
to say the truth sir Louise Braille many of Blind and vision impaired persons are either teachers or beggars in Africa.
It’s sad to say as the sighted teachers get free teaching aid the blind and vision impaired teachers have to buy braille copies. For those who decided teaching is not their cup of coffee like me this is one of our daily struggles.
No wonder most Blind and vision impaired persons are poor than our counterparts.
This electronic braille device am using today costed arm and a leg while you the sighted counterpart bought a kabloti somewhere in Juja.
Shall we be equal really?
Back to history, the braille system began to spread worldwide in 1868 when a British group, now known as the Royal National Institute for the Blind, promoted braille’s
acceptance. Eventually braille swept the world and brought literacy to the blind in every language.
Although in Kenya not many blind and vision impaired have access to braille or even information.
Marking the centennial of Braille’s death in 1952, the French government proposed relocating your grave from your hometown of Coupvray to The Pantheon in
Paris, where many of France’s most important historical figures are interred. Braille, however, you had requested that you be buried in Coupvray, and the town’s
officials were reluctant to let your body be taken away. So an unusual compromise was struck. Most of your earthly remains were entombed at The Pantheon,
but your hands remain buried at the Church Cemetery in Coupvray.

I promise to visit your historical site so that I will cool my nerves.

Unfortunately, many of Blind and visually impaired persons globally are currently facing
several great problems specially for survival of their existence in
society due to adopting highly negative attitude by concerned
Government authorities in Kenya at national and county levels.
But, in the end, all of us will surely win this battel for survival
for our existence. We shall never forget you. Your legacy on this language lives on.
I hope and trust the newly blinded and vision impaired persons present, and future will join this battle.
What is Braille? Braille is a tactile representation of alphabetical and numerical symbols using six dots to represent
each letter, number and even symbols. Braille is essential in the context of education, freedom of expression and opinion as well as social inclusion as
reflected in article 2 of the Convention on the Rights of Persons with Disabilities.
My dream as public policy scholar and braille consumer is well articulated by my friend #Christine Simpson, “Braille is now more widely appreciated and understood across the community. We see braille included on street signs in many cities; on lift buttons; on
directional signage at transport hubs and in many larger buildings; on pharmaceutical product labels; and increasingly at tourist attractions, museums
and other places of public interest. The portability of braille available thanks to braille enabled devices has also made braille usage more appealing
to students and those who need to access information while on the move.”
At list for the reader today know that in braille language A is written as dot 1.
B is written as dots 1 and 2.
C is written as dots 1 and 4.
The comment box is open.
Join me in opening and shaking the Blind concoction to celebrate this special day.

What’s Next? severe disabled wish. guest Author: petergibilisco Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

I wrote and published this article on OnlineOpinion over 11 years ago. It is troubling to me that nothing much has changed over all that time.

I am still trying, even though I’ve got 1/4 of the abilities I had back then in 2008. That means now, I am constantly pushing the boundaries of my remaining
abilities to speak against injustices. I want to achieve so much in a personal, social and academic sense and all I ask is to be given the opportunity
to do so.

It is probable that everyone will get an itch somewhere, sooner or later. And so, when you get an itch, you do what comes naturally: you scratch it! It
is a simple process that itches are made to feel better when scratched. Or so it seems.

But what if you can’t scratch? I mean, what if you can’t scratch where it itches because you have nothing to scratch it with? It may be an itch that is
underneath your plaster cast that is in place to help with the healing of your broken knee-cap. What if the itch can’t be localised? What then? It is not
such a simple problem.

I happen to know a lot about the problem of scratching itches from a rather unique perspective How? Because I have a neuro-transmitter dysfunction that
simply won’t allow me to reach wherever it itches. So I have learned to cope, to block out the irritation. I have to admit that it is, indeed, a luxury
when I am fortunate enough to have a very empathetic support worker who can help me by scratching my back or my ear, but I won’t bore you with all the
details of my relief because I have only raised this with another purpose in mind, a purpose I might add which might help our society understand the itches
people like myself have to deal with.

I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich’s Ataxia. I’ve been attacked by this progressive
disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene
and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need
for empathetic behaviour from those directly related to disability.

In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You’d have to say that my life, with the progression
of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled
people have to continually and progressively confront.

In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools
and resources that are outlined in just policies.

And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant
society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched!

Yes, we need ramps and railings that lead into public buildings. But, there needs to be something more. Let me tell you that I have received much, for
which I am very grateful. And have come such a long way with so many people to thank. I often wonder, how can someone like me have got this far? And with
a disease that has made a greater impact over my body as time passes.

I am now 45 and my care needs increase almost by the day. Yet despite this I have just completed a study tour in Hawaii visiting the University of Hawaii,
Center for Disability Studies. My social enquiry in the US focused on how many people with severe disabilities yearn for, and are capable of performing,
most human activities – with assistance from a support worker.

I was diagnosed with Friedreich’s Ataxia at 14 and then my mother died of cancer when I was 18. I was well and truly on a downward emotional and physiological
spiral. By 23, I was confined permanently to a wheelchair. But it was also around this time, with the encouragement and perceptive advice from a close
lady friend which lifted me out of a fantasy land of self-pity, that I began studying for an Associate Diploma in Accountancy at Dandenong TAFE. That inclusive
and happy learning environment gave me inspiration to tackle life with vigour and it still serves as a reminder to me when, like anyone else, I develop
the usual emotional itches which need scratching. That was my 1984.

But that year, 1984, reminds us of something else doesn’t it? Since then, my life has been not unlike the problematic world that George Orwell describes.
It is especially relevant to people like myself who are really very grateful for all the special consideration, no matter how insignificant, equal opportunities
and affirmative action we have received over the years.

But why is it problematic? It is problematic in an Orwellian sense because we know that if we raise a voice in criticism, even if we are trying to be constructive,
we put ourselves in an exposed situation. After having traveled so far, with so much kind assistance, it can too easily sound like we can never be satisfied
and can never get enough freebies.

It’s as if after graduating with my PhD, and then in 2007 when I was presented with the Emerging Disability Leader of the Year award, I developed a new
itch, but just didn’t know where so it could be scratched. My PhD thesis, my academic journal articles and my On Line Opinion pieces were all being applauded
but, somehow, the major issue I was trying to discuss was being ignored.

I think public policy towards people with disabilities, and in particular severely disabled or progressively disabled, has ignored some important factors
to the detriment of our society.

First, I will sound like a broken record by offering my analysis over and over again; and second, our society cannot be, or become, the compassionate solidarity
it claims for itself if it doesn’t hear what I am trying to say. I have a sense of obligation here to speak out. It’s not just for me, although I am painfully
aware of its application to myself and to my own situation.

The point is this: for some of us the special consideration, equal opportunity and affirmative action, designed to get disabled people into the mainstream,
paradoxically brings us to a more exposed and needy situation. This cannot be addressed without more special consideration, further and ongoing application
of equal opportunities after training is completed and further affirmative action once we have obtained our qualifications. It is a simple point that can
be readily illustrated.

This illustration of policy dynamism is based on the approach I have identified as pragmatic social democracy, advocated by Hugh Stretton and Marta Russell,
in my Doctoral Dissertation.

Once a person with a severe disability at TAFE, for example, receives a diploma then society’s responsibility to that person is not somehow fulfilled,
because at that point the obligations have actually increased. The person may need special support to attend interviews, and when that person is offered
and accepts a position of employment it may be necessary for technical and other assistance.

I could repeat this point for each of the steps I have made through my own higher education: TAFE Diploma, Bachelor of Business, Bachelor of Arts, Master
of Arts, and Doctorate of Philosophy. There are other facets to keep in mind as well. Somehow we need to find a way to view and support people with a disability
in pro-active methods of equal opportunity; rather than focusing on the medical model’s view of a sympathetic approach: people with severe disabilities
need an empathetic approach, aligned to the social model. My assertion is that society’s responsibility increases in specific ways oriented to professional
commitment and involvement, once the student with a severe disability graduates.

But, as my own needs, and possibly those of others, have increased or are increasing, support is not only to be seen in educational terms. The dynamic
of increasing support reflected in policy should also seek to meet the increased needs which the policy at an earlier point has also helped to bring about.
There are also increased needs of those who support, as well as, the increasing needs of the person with a disability.

For a TAFE graduate like myself, I was faced with a daunting prospect. I had a wonderful Technical and Further Education experience, which affirmed me
as a mature-age student, and I was no different in some ways from any other TAFE graduate: “What next?” we asked. Leaving TAFE for all of us in that year
was a life changing experience, but life moves on.

Life moves on. That is the irony that is central to my attempt to point to the dynamic at work here. But the paradox is that not all of us, and not all
disabled people, have to deal with a progressive disease. To apply for a job in an accountancy firm after my graduation from Technical and Further Education
would have been to ask the prospective employer to initiate a general policy change that we, as a society, were only just beginning to think about let
alone implement.

The political consideration of equal opportunity and affirmative action was still at an early stage. So, as I look back on it now, it is no wonder that
I was attracted to the higher education field which proved to be more advanced, and hence more hospitable to me with my particular needs, than most other
areas.

I am the beneficiary of higher education which has been required to make room for disabled people. But then, it seems that higher education was also being
re-oriented to make it compatible with job training for a post-industrial society. In such an environment, as Marta Russell has pointed out, a university
degree becomes the evidence that society has met its obligations to help disabled people compete. Equal opportunity was not always matched with appropriate
affirmative action.

In this respect I would suggest that affirmative action needs to be taken to a new level. And perhaps this new level cannot be reached without recognising
the ongoing obligation which a degree-granting institution has to its graduates. Understanding mutual obligation from the institution to its highly qualified
graduates is downplayed if not lost entirely.

In my own case, a university which takes a qualified post-graduate student with Friedrich’s Ataxia into its PhD programs, should not view itself as giving
a sympathetic expression according to the medical model’s agenda, which has the unfortunate ability of systematising disability policy pursuits. Although
that is, I am sorry to say, the predominant way in which Australian higher education under third way and neo-liberal policies tends to view such achievements.

That’s the itch I have wanted to scratch. We need universities that will recognise that their institutional mutual obligation is not transacted merely
by granting degrees and then every year thereafter sending out brochures inviting its highly qualified alumni to give generously to the university’s noble
cause.

In my case I am forced to ask: How is it that the university has not required me to give back by post-doctoral research and to be part of its ongoing research
effort? How is it that it can take on a candidate without expecting to maintain its responsibility to provide ongoing support after graduation, and also,
in order that its own research work is enhanced by my contribution?

Note, my point is not to ask that my work be judged before I do it. I am referring here to the lack of effort or empathy that seems to come from the side
of those administrating higher education institutions in Australia.

Writing On Line Opinion pieces, or developing my own Blogspot, are indeed satisfying experiences and I would not want them to be taken away. But such personal
satisfaction at getting a paper published is not the main game. What I am concerned about is the development of genuine policy for the severely disabled,
and in particular, policies that will seek to meet needs that arise from progressive disability.

I have always done what is needed to be done, and I only wish to keep bringing to light the individualism of people with disabilities.

PETER BOOK POSTER FINAL

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

2 disability experts paints a grim picture on the BBI report “why the disabled Kenyans always fall into cracks” Authors: DR Siyat Abdi and Mugambi Paul.

According to the World Bank, WHO and the United Nations One billion people, or 15% o

f the world’s population, experience some form of disability.
Persons with disabilities, on average as a group, are more likely to experience adverse socioeconomic outcomes than persons without disabilities. Such as less education, poorer health outcomes, lower levels of employment, and higher poverty rates.

Barriers to full social and economic inclusion of Kenyans with disabilities include inaccessible communication, navigating the physical environments, inaccessible transportation, the unavailability of assistive devices and technologies, non-adapted means of communication, gaps in service delivery, utter unemployment inequality and generally discriminatory prejudice and stigma in Kenyan society.

From our professional lenses and in-depth analysis, we observe that the voice of this largest minority was never hard on the BBI 156-page report.
Notwithstanding, understanding the influence of different stakeholders in public policy making is very Critical “Carolyne 2016].
Although the BBI Taskforce had lots of public network in executing some of the insisted public approaches [Carolyne 2017], the task force did a total disservice and provided just a window dressing of Kenyans with disabilities.

In our collective opinion, the first omission and a major setback was the lack of representation of persons with disability in the BBI task force for persons living with disabilities.
This affirms the incessant notion of the government of Kenya of not ensuring article 54 of the 2010 Kenyan Constitution is realized.
Our expectations were high, and therefore, we expected the Taskforce would provide a clear direction on accessible representation that responds to the needs of persons with disability.

Secondly, on behalf of all Kenyans with disabilities who are the largest minority, we affirm the term “Disability” appeared 9 times in the BBI Report.
This was not in reference to any commitments to the 9-point agenda in their Terms of Reference but giving basic information of the experiential circumstances people with disability find themselves in Kenya.
In other words, the task force deliberated on the historical background on issues regarding persons living with disabilities without offering any commitment on how the nation will address the historical and traditional social injustices encountered by person with disabilities in Kenya.
Instead, the Taskforce echoed the common cliché we are used to by outlining traditional principles which clinically failed to work in the past.
No doubt, the BBI task force affirms what Paul Mugambi said in one of his articles, emphasising why the disability movement in Kenya must change tact once and for all!
http://www.mugambipaul.com/2019/11/17/why-the-disability-movement-in-kenya-should-stop-crying-faw/.
Increasing inclusivity on a political, economic, social, religious, cultural, youth, and gender basis is not Inclusivity devoid of disability.
How long are we going to continue being marginalised both in the national government and in the Counties?

It is worth noting the reflective theoretical commitment of Kenya to the 2030 Agenda for Sustainable Development goals.
It affirms clearly that disability cannot be a reason or criteria for lack of access to development programming and the realization of human rights.
Additionally, the SDGS framework have already been integrated in both short- and long-term Kenyan plan strategies, but limited wheels of implementations are in actions.
Its significant, to pronounce that the SDG framework has seven targets, which explicitly refer to persons with disabilities, and six further targets on persons in vulnerable situations, which again include persons with disabilities.
The SDGs address essential development domains such as education, employment and decent work, social protection, resilience to and mitigation of disasters, sanitation, transport, and non-discrimination – all of which are important obligations for the Kenyan government.

Unfortunately, the BBI task force team clearly seem to have been communicating to persons with disabilities in the charity model.
This is to mean the expressions reference to persons living with disabilities seem to be a separate group from Kenyans and this shows that there was exclusion in addressing persons with disabilities in the BBI report.
Thirdly, the term inclusion appeared 24 times.
The only relevant was the 22nd mention.
The cruel irony is that Article 174(e) of the Constitution provides that one of the objectives of devolution in Kenya is ‘to protect and promote the interests and rights of minorities and underserved or discriminated-against communities.’
It is for this reason that the Taskforce strongly feels that measures leading to greater inclusion, equality, equity, and basic fairness at the National level should be mirrored in the Counties, both in law, policy and administration.”
Do you think people with disability will enjoy this commitment?

Fourthly, the term Physical access has been mentioned twice and the 2nd one is relevant to persons with disabilities.
Increase physical access for people with disabilities into buildings, particularly public ones, and transport.
This shows the limitation of the BBI report since it’s not just enough to talk of physical access of built environment and transport only.
Kenyans living with disabilities still need more in area of universal and accessible housing, employment opportunity, and access to building (public and social facilities), communication and access to adaptive technology among many other disability services.
Fifthly, the term “has access” has been mentioned 42 times in the report.
The only relevant area is the 2nd mention. “
The aim should be for all Kenyans to have to cover the same distances to access public services.”
The access to information seems to be one of the major recommendations for the BBI task force but they avoided to demand for alternative accessible formats which could have ensured those with vision loss (blind), those with cognitive disability and other print disabled access information.
The BBI task force would have well utilized the Marrakesh treaty as a benchmark on access to information with excellent literature support from the United Nation Convention for the Rights of Persons with Disability (UNCRPD).

The BBI report missed opportunities to present across several mechanisms on enhancement of rights of people with disability in Kenya:
For instance, we anticipated that they would have an opportunity to present a structured Social protection systems that would be barrier-free and inclusive, and in a manner which ensures that everyone has equal opportunities to access social protection schemes, which may require special measures for particular categories of the population who may face additional barriers, such as persons with disability and the elderly Kenyans.
They missed to articulate the structure and design implementation of social protection, taking into account Human rights principles and standards at every stage of the schemes in the context of the level of marginalisation experiences of persons with disability both in the national government and in the Counties.
We welcome the Taskforce proposal to change the County Executive, including, but not limited to, the running mate of every candidate for the position of Governor.
While it is commendable to suggest consideration of the opposite gender, window of opportunity should have been given for any governor to decide their running mate, and if possible opportunity to make informed decision to pick a person with a disability as a Deputy Governor.
Another missed opportunity was to empower the National council for People with Disability NCPWD to be elevated a disability commission instead of a semiautonomous body incapable of servicing people with disability.
This could be either through a referendum or by legislation which could have subsequently ensured that the disability commission is well resourced and has the capacity to provide appropriate disability services based on social model and ensure the realization of disability rights.

On a positive note, the beauty of the BBI report is the importance of public participation and engagements. We hope people with disability will be fully engaged in decisions that matter to them.

In conclusion, the BBI report seem to have nailed the coffin for persons with disabilities by claiming that people with disabilities in Kenya are bunch of winchers, always complaining of injustices.
It seems the task force doesn’t understand that people with disabilities in Kenya are tired of the prolonged injustices experienced.
Yes, we must complain and continuously complain because we don’t expect civil and political elections of representatives in Party primaries and nominations to be fair; free and transparent elections in the context of persons with disability.
We must raise our voice because we are severely marginalised both in the national government and in the Counties in terms of employment and social services.
We cannot be satisfied with the BBI solution of just using reputable private recruitment companies to help, but to put in place recruitment legislations that give Kenyan people with disability opportunity to exercise their skills and talents to maintain their livelihood.
What the Kenyan people with disabilities need is real tangible implementation of legal and policy frameworks and ensuring persons living with disabilities actually access all government and private services just like any other Kenyan.

The views expressed here are for the authors and do not represent any agency or organization.

DR Siyat Abdi
Is a independent disability consultant.
Mugambi Paul is a
Public policy diversity and inclusion expert.

Public participation event

address to the public on importance of engaging disabled persons

The dream of saving the disabled Kenyans Author Mugambi Paul.

We’ve come a long way, with disabled Kenyans having more opportunity than ever, but there’s still a long way to go.
Since 1992, the International Day of Persons with Disabilities (IDPD) has been annually observed on 3 December around the world. The theme for this 2019
IDPD is ‘
Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’. The theme focuses on the
empowerment of persons with disabilities for inclusive, equitable and sustainable development as envisaged in the 2030 Agenda for Sustainable Development,
which pledges to ‘leave no one behind’ and recognizes disability as a cross-cutting issues, to be considered in the implementation of its 17 Sustainable
Development Goals.

My hope is that Kenya will reach a point where basic education about acceptance and inclusion is no longer imperative.

I hope we’ll reach a point where it’s commonly understood that people with disability have the same rights to independence, employment, respect and access
to facilities as everyone else.
And I believe finding jobs for the thousands of Kenyans with disability who dearly want work is an essential part of getting there.
As a public policy scholar, I observe, it’s difficult for a blind person to land a job, even with stellar qualifications. A blind person with an associate degree is statistically less likely
to be employed than a sighted high school dropout.

Often, employers who don’t have experience working with disabled persons can’t conceptualize
how a disabled candidate can perform the job’s duties.
It makes matters worse employers who have experienced working with disabled persons are the barriers of enabling the Kenyan disabled to be employed.
As Helen Keller once said, “The chief handicap of the blind is not blindness, but the attitude of
seeing people toward them.”
These ungrounded fears contribute to the persistently low employment rates for disabled people.
Statistically as research shows at list in a population of 10 disabled Kenyans 8 are not employed.

To shift attitudes and make a difference — more people with disability need to be supported in the workplace.
I opine that most employers do not know that disabled people aren’t in the workforce, meaning employers are missing out on the benefits of hiring people with disabilities, including improvements in profitability,
competitive advantage and innovation.

Moreover, I grew up in a rural set up. where my community never bought into who I was — and made my world not as accessible as they possibly could. I had a great struggle to accomplish my educational journey,
where I faced discrimination and not treated as a peer. I believe right now,
There are many people with disability hoping to engage in work and the community more broadly and receive the opportunities that I was given so naturally.

They deserve the opportunity to be employed and fulfil their potential as much as anyone else in the African community.

I know what I most want to achieve as I celebrated my 22nd Birthday of being Blind.
Secondly my dream is
What I most want is for the community to use IDPwD as a launching pad for further action.

At this year’s celebration I hope governments, individuals and organizations will take the opportunity to commit to one concrete action towards removing barriers to accessibility
and inclusion for disabled Kenyans.
This is not too much to ask!
Get your workplace to give a person with disability a job.

Look for ways you can make your organisation, building or website more accessible for people with disability.

Create a paid internship program to help people with a disability get the skills they need to find a permanent job.

Provide anti-discrimination and bullying training to your staff — particularly those in customer facing roles.

If I can convince one person to roll up their sleeves and create a job for a person with disability or improve accessibility and inclusion within the community
— I’ll be satisfied with my contribution as a public scholar and expert in diversity and inclusion.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy and diversity and inclusion expert.